My CF Is My Burden Alone

It is natural that we grow attached to the people with whom we develop relationships. That’s just how it is. There’s not much more to it. The early days of friendship are full of tiptoeing around heavy topics or shying away from our truest selves. That’s what makes developing friendships fun. It’s exciting to see people shed their layers as they become more comfortable, slowly unveiling the more honest parts of themselves.

This isn’t to say we aren’t who we are when people meet us for the first time. It’s not bad to have a protective guard up. If we were our truest selves at all times, we probably wouldn’t be friends with all of the people we’re friends with. We all have different roles to fill. I’m different while playing the role of a brother, or a son, or a friend, or a boyfriend, or a writer, or a scientist. Our identities are an amalgam of all the roles we play, and it’s OK if different parts of our identity come out while playing different roles.

Cystic fibrosis (CF) also influences the roles we play. Sometimes I’m a patient. Sometimes I get sick, which is another role to play. To some people, “sick” is an identifier of CF. I consider myself “sick” when I’m transiently ill with a cold or exacerbation. But I’m also a writer and an advocate.

I’ve tried to cultivate authenticity in my writing, which means I try to be authentic about CF in my personal life. I’ve been open about having CF since childhood. But I’ve also downplayed it quite a bit. Around my sophomore year of high school, I wanted to be autonomous in my care. I wanted to handle my nebulizers and lead the conversation at CF appointments, which resulted in a bit of distance between my parents and me regarding my care. They were still heavily involved, but I wanted my care to be less of a burden for them.

Of course, my parents are my parents. They want to be as involved as possible. My parents are compassionate and have supported me every single day of my life, and I’m deeply grateful for that. But I want to be as self-sufficient as possible. I try to consider how I should let them be involved — they are my parents, after all — but I also convey to them that I view CF as primarily my burden.

It is true that, as we get closer to people, we grow attached to them. I’ve often thought about how, whenever somebody befriends me, they’ll inevitably learn about my CF, my sister, and all the complicated aspects of being friends with somebody with CF. (That isn’t to say that people shouldn’t befriend others depending on their circumstances!) Life is made interesting by the relationships we develop with others. That’s what drove me toward advocacy in the first place.

But I don’t want CF to be anything but mine. I’ve talked to my therapist about this. There has to be a middle ground: People want to be supportive of their friends, but I don’t want people to worry about me more than they worry about their other friends because I have CF. Add depression and anxiety to the mix, and it starts to feel like people will never stop worrying about you.

It can be hard for me to deal with. I don’t like the idea of people worrying about my health or mental status every day. It’s something I’ve struggled with since moving out of my parents’ house during my freshman year of college, but I’ve come to terms with it. People are going to worry — I worry about all my friends all the time! — but the best way we can support them is … by supporting them.

Supporting your friends means talking to them and, if need be, offering your ear or time. Emotional conversations can feel transactional at times, but that needn’t be the case. Friendships and relationships are the spice of life. The more we understand why other people act and how they perceive the world, the more compassionate we become.

Follow along with my other writings on my humbly named site, www.trelarosa.com, or you can subscribe to my newsletter at trelarosa.substack.com. 

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.